Waiting game

Karen1418

Hi Everyone,
I just saw my gyn/onc since I'm back home. He and the doctor in Florida agree the cancer is back, but nothing showed up definitively on the CT scan in April. So, I have the choice to start chemo now based on the CA125 reading or wait. I'm going to wait and see him again in the middle of July after another CT scan. But I just got a call from his nurse saying my CA125 has gone up to 384 over 75 at the beginning of April. She said the doc wants to stay with the "wait" plan. I will do that, but I got so upset with the new number. I don't know what the numbers mean for me, as I gather they can be anywhere between about 7 and several thousand. He also told me a recurrence means they no longer seek a cure, just to control it. I know that can be a long while, but it's still a downer to hear. Love and Prayers to you all, Karen

jane65

Karen
Hi Karen,
You must be so upset and I can empathize with you because my CA125 has gone up for the last 3 months, and I had my CT scan today.

Mine is not as high as yours, that would certainly be of concern to me, as I'm sure it concerns you.

We know that OVCA is a chronic disease without a cure, and we must treat it as such with chemo or other treatments, and yes it's a terrible downer knowing we'll have to deal with it for the rest of our lives. I'm sorry that you have to adjust to that, as I had to, it's tough.

The first thing that crossed my mind is that you should get another opinion, waiting after such a big jump in your CA concerns me, as it does you. I'm not sure about the "wait and see" for months. If something is going on, it's getting more time to grow, or possibly spread. What do you think about that?

My chemo drug is no longer working, and one of the two options my oncologist is giving me, is to wait for the CA to go up another few points, from 17.3 to 25 and then start chemo again, or start chemo now irregardless of what the CT shows. We don't think it will show progression of the cancer.

Please think about my suggestion for another opinion and let us know what you decide.

Best wishes to you for good health,
Jane

ladyjogger31

jane65 said:

Karen
Hi Karen,
You must be so upset and I can empathize with you because my CA125 has gone up for the last 3 months, and I had my CT scan today.

Mine is not as high as yours, that would certainly be of concern to me, as I'm sure it concerns you.

We know that OVCA is a chronic disease without a cure, and we must treat it as such with chemo or other treatments, and yes it's a terrible downer knowing we'll have to deal with it for the rest of our lives. I'm sorry that you have to adjust to that, as I had to, it's tough.

The first thing that crossed my mind is that you should get another opinion, waiting after such a big jump in your CA concerns me, as it does you. I'm not sure about the "wait and see" for months. If something is going on, it's getting more time to grow, or possibly spread. What do you think about that?

My chemo drug is no longer working, and one of the two options my oncologist is giving me, is to wait for the CA to go up another few points, from 17.3 to 25 and then start chemo again, or start chemo now irregardless of what the CT shows. We don't think it will show progression of the cancer.

Please think about my suggestion for another opinion and let us know what you decide.

Best wishes to you for good health,
Jane

Prayers
Hi Karen, I will be saying prayers for you. A lot of us are in the same boat as you. It is hard to wait and see. Jane has given you some good advise. I know I will be on chemo the rest of my life with little breaks in between.I've come to accept that. Just enjoy each minute of your life and please don't worry. Like Saundra would say worring is wasted energy.
Hugs and Prayers, Terry

kris43

CA 125
Karen - has your CA 125 normally been a good marker for you? If yes, then why wait and see. If it's always been up and down, etc - then maybe they are waiting for evidence to show up on the scans, although I've always heard that anything smaller than 2 cm can't be seen on the scans any way.

If my number went to 75 I'd be doing something - and if 384, I'd be telling the doctor to hop to it. But that is only me and I've not yet had a recurrence. My fear would get the best of me and I wouldn't be able to wait.

I hope you hear something soon and can decide what road to take. You know your body best - do what makes you comfortable. Sending many positive thoughts to you as well as a hug.

Kris

saundra

Roller Coaster Ride
OVCA is just a ride on the roller coaster, sometimes slowly going up and then whooshing down, emotionally. Looks like you are joining a lot of the bunch with a rise. My CA125 is on a slow rise for 6 months. I think the anti estrogen may be holding it back. Still nothing showing on the CT or physical yet.
Will hear the recommendations in June maybe. Just take it one day at a time and know we are all covered in prayer. (((HUGS))) Saundra

Karen1418

kris43 said:

CA 125
Karen - has your CA 125 normally been a good marker for you? If yes, then why wait and see. If it's always been up and down, etc - then maybe they are waiting for evidence to show up on the scans, although I've always heard that anything smaller than 2 cm can't be seen on the scans any way.

If my number went to 75 I'd be doing something - and if 384, I'd be telling the doctor to hop to it. But that is only me and I've not yet had a recurrence. My fear would get the best of me and I wouldn't be able to wait.

I hope you hear something soon and can decide what road to take. You know your body best - do what makes you comfortable. Sending many positive thoughts to you as well as a hug.

Kris

Kris
Hi Kris,
Thanks for the reply. I don't know if the CA125 is a good marker for me or not. It was about 90 when I was diagnosed with StageIIIc in July of 2007. I don't remember how fast it went down, but it stayed under 20 until January. I've had two opinions, one in Florida and one here. I have a lot of confidence in my gyn/onc here and am comfortable waiting after he explained my options. Before I saw him I was quite nervous about waiting even the month I did. I am so happy to hear you haven't had a recurrence. May that continue to be the case! Love, Karen